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      Welcome   01/25/2017

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CHfather

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  1. That's pretty essential, the mask with the air bag (reservoir). Your mask will probably have a small circle of open holes on one side. Cover that with tape, or with your thumb, as you inhale (so you're inhaling only pure O2). Be sure you have a tight seal with the mask to your face. Cut off the strap (so if you fall asleep the mask will come off). Is your oxygen in tanks (not a machine that makes oxygen)? Also very important. And a regulator that goes up to at least 15 liters per minute. And good breathing strategy. You'll find your own strategy, but for many it's deep breaths and very forceful exhales at the beginning (almost doing a "crunch" to force air out of your lungs). Some people hyperventilate with room air for 30 seconds before their first O2 inhale. Hold the O2 in your lungs for a few beats. Look down toward your feet as you are doing it all. For many, a shot of caffeine while starting the O2 speeds the abort: could be some pre-made strong coffee; many use the 2 oz. energy shots or energy drinks. Many have found that going beyond the standard setup of the basic mask and 15 lpm makes a big difference, but let's see how it goes for you with what you have.
  2. wimp', it is good to read. As you would quickly see from your reading, the most significant thing you should have is oxygen. If you had it before and it didn't help you, you probably need to try it again, with a better system. You should almost certainly also start the vitamin D3 regimen. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 And, given your past experience, the numbered files in the ClusterBuster Files section might be of interest to you. Maybe look at the "Triggers" document when you're over there. There's lots more, of course, but I think those might be the current highlights for you. Ask anything, any time.
  3. Okay, so this has been making me pretty nuts. I guess at this point I'm asking whether there's an admin who can help me out . . . I have an idea what's going on, but no way to correct it. I'm working an a PC (not phone or tablet). Using my standard Microsoft Edge browser, I see none of the things either of you (Pebbles and spiny) mention. Using Google Chrome, I DO see them. HOWEVER, I still get no attachment or paperclip option. So, trying everything I could think of, I clicked the down arrow next to my username at the very top right of the page. One of the items on the dropdown menu there is "Attachments"(!!) Things I have previously attached are there, going back to 2013 (nothing more recent than 2014), along with a message saying "You have used 569.07 kB of your 500 kB attachment limit." So I suppose that must be why I get no in-post attachment options today -- because I used all my attachment space up in 2013 and 2014. This seems bizarre, but I can't fix it, unless maybe I go back to those '13 and '14 posts and delete them.
  4. Thank you! The only thing I see in the lower left here is the "Notify me of replies" checkbox. Gonna see what happens if I send this and then "edit" it. (Nope. Maybe it's my operating system or something.)
  5. Can anyone tell me how to attach a PDF or other document to a post? Pebbles' has done that lately, but when I go to the "Insert other media" item, I just get run around in circles, and I don't see any other place to go to try to do it. Thank you!
  6. You got it right, 'Mike. Looking forward to hearing more from you.
  7. THANK YOU! I was more interested in the other technologies, such as transcranial magnetic stimulation (TMS), that are discussed in the article. Now I can read it. TMS has a lot of fascinating applications.
  8. Pebbles', do you by any chance have access to this recent report: https://www.ncbi.nlm.nih.gov/pubmed/29601305? ("Noninvasive neuromodulation in migraine and cluster headache")
  9. Are you splitting your injections? You can break open the autoinjector (see https://clusterbusters.org/forums/topic/2446-extending-imitrex/), and increasingly people are getting it in vials and establishing their own level. 2mg is plenty for most people (most autoinjectors have 6mg). There is a lot of evidence that triptans make attacks worse and extend cycles. No oxygen??????
  10. Jen', these are the symptoms of CH. "Attacks of severe, strictly unilateral (one-sided) pain which is orbital (the area of your eye socket “behind your eye”), supraorbital (the area around your eye socket), temporal (area of your temple to the side of your eye) or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. Pain is maximal orbitally, supraorbitally, temporally or in any combination of these sites, but may spread to other regions of the head. Pain almost invariably recurs on the same side during an individual cluster period. During the worst attacks, the intensity of pain is excruciating. Patients are usually unable to lie down and characteristically pace the floor. The attacks are associated with one or more of the following, all of which are ipsilateral (on the same side of the head as the headache pain): conjunctival injection (the mucous membrane that covers the front of the eye and lines the inside of the eyelids looks red/inflamed: “red eye”), lacrimation (the flow of tears), nasal congestion, rhinorrhea (nasal discharge/”runny nose”), forehead and facial sweating, miosis (excessive constriction/tightening of the eye’s pupil), ptosis (drooping of the upper eyelid), eyelid edema (swelling/”puffiness” of the eyelid from excessive watery fluid collection). Most patients are restless or agitated during an attack." Typically, as you see, the eyes are involved, as the primary area of pain, and with visible symptoms on the side of the pain. Also nasal congestion and "runny nose." And a very typical thing is that agitation/inability to sit or lie still during an attack. And CH is typically one-sided, so if you are experiencing pain in both temples (even one at a time), it might not be CH. I'm asking some questions here, but you don't need to answer them, since I don't think we can really make a reliable diagnosis in this way. You are welcome to answer them, but of course you need a headache specialist for a real diagnosis. You idea of keeping a diary of your attacks is very good -- that usually helps a doctor with the diagnosis. You say that migraine meds don't help. Does that include a triptan (such as sumatriptan/Imitrex), or are you using mostly over-the-counter things for your migraines? Because CH is responsive to triptans, but not in pill form -- as injections or nasal spray. And you suggest that caffeine isn't helping. It often does help with CH, but sometimes it needs to be in a stronger form than a cup of coffee -- an "energy shot" such as 5-Hour Energy or an "energy drink" such as RedBull (for a variety or reasons, including that they have more caffeine), the shots are more effective. You say you wake up with a pounding headache. Do you mean that you wake up in the morning in that way, or you are awakened from sleep by it? People typically can't sleep through a whole CH attack, so if you are waking up at a "normal" time in the morning and then feeling the attack, it might not be CH. I feel uncomfortable recommending anything to you, since we're not sure you have CH. If you want to try drinking an energy shot at the first time as an attack, it might help. That's about the only short-term non-medical intervention I can think of right now. As big j says, you could try Benadryl (4x/day, with 25mg during the day and 50mg at night), since allergies make a lot of headaches worse. I just don't know how far you can reliably/safely go in any direction when we're not sure it's CH.
  11. Unfortunately, I can't access the full article, where the interesting stuff would be. So, FYI. https://www.ncbi.nlm.nih.gov/pubmed/29601305 EDIT: Here's a link to the full text, thanks to another member. https://clusterbusters.org/forums/applications/core/interface/file/attachment.php?id=1877 PURPOSE OF REVIEW: The purpose of this narrative review is to provide an overview of the currently available noninvasive neuromodulation devices for the treatment of migraine and cluster headache. RECENT FINDINGS: Over the last decade, several noninvasive devices have undergone development and clinical trials to evaluate efficacy and safety. Based on this body of work, single-pulse transcranial magnetic stimulation, transcutaneous supraorbital neurostimulation, and noninvasive vagal nerve stimulation devices have been cleared by the United States Food and Drug Administration and are available for clinical use for the treatment of primary headache disorders. SUMMARY: Overall, these novel noninvasive devices appear to be safe, well tolerated, and have demonstrated promising results in clinical trials in both migraine and cluster headache. This narrative review will provide a summary and update of the proposed mechanisms of action, evidence, safety, and future directions of various currently available modalities of noninvasive neuromodulation for the treatment of migraine and cluster headache.
  12. Adding just a little to what Jon said. . . . Here's a link to learn more about the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 In San Francisco, UCSF Medical Center Headache Center is led by one of the world's leading CH experts, Dr. Peter Goadsby: https://www.ucsfhealth.org/clinics/headache_center/ It's hard for me to imagine how fresh air helped you, but as Jon says, the highly-effective, no-side-effect standard abortive is oxygen. Lucky for you (compared to many people), I think you can count on seeing a doctor at Stanford or in SF who will prescribe O2. For some people, sipping ice water through a straw aimed at the roof of the mouth, in order to induce "brain freeze," will stop an attack. Any other method that gets that roof very cold (such as holding frozen juice concentrate against it) will accomplish the same purpose. I'm not mentioning drugs or druglike things such as melatonin and Benadryl, since you say you don't want that. If you change your mind, let us know. Since your hits come at night, you could try sleeping in a recliner or in some more upright position (e.g., at a table with your head on pillows on the table).
  13. 'j, Lots of people believe, and there is some research evidence for it, that triptans make attacks worse and extend cycles. And trex is not good for you. You can split your trex injections, getting 3 or at least 2 from every injector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  14. An attack that wakes you up and is already raging is harder to stop with O2, for sure. You don't say how long your attacks are, but I'd be willing to bet that O2 could still shorten them. spiny has mentioned putting a washcloth over the tip of a torch in her early days (I think). Is there a reason you can't bring your equipment into the house and give it a try? Ever tried an energy shot, such as 5-Hour Energy, to stop an attack? Works well for many (again, you can down one as soon as you wake up with an attack, as you start on the O2). For many, it doesn't keep them awake even if they drink it the during the night.
  15. 'j, you haven't mentioned oxygen. you have it?